Complex Disease - Cohort Integration Working Group
Our aim is to bring together clinical information and biosamples from 100,000 individuals with Parkinson’s disease (PD) who have donated their time and effort to help us understand and treat the disease.
We are assembling clinical and genetic data from eligible existing cohorts, as well as new cohorts of individuals with PD and healthy controls as part of the global collaboration. We have made great strides in PD research by comparing the genetic makeup of affected people with unaffected controls. This has enabled us to understand risk factor genes.
As part of this study we aim to understand variations between people with PD. For example, why some people progress slowly and some quickly and why some people develop side effects to medication and others have no problems. To understand this, we need to study genetic and clinical data together and we are collaborating with clinical cohorts worldwide to collate and study this data.
Progress so far
- Established clinical data core data set
- Created site interest forms and FAQ
- Created google forms for cohort sign-ons
- Contacted 20 cohorts and are interested in participating
- Established workflow for cohort adoption with Operations and Compliance group
Remaining Year 1 Goals
- Appoint GP2 funded postdoc and PhD student